Mothers accused of harming their babies are turning to the same science that freed Kathleen Folbigg

By Hilary Whiteman, CNN

Brisbane, Australia (CNN) — Kathleen Folbigg had her first child at 21, and like most new moms kept a diary of the times her baby fed, slept, burped and bathed.

But the records stopped abruptly after 19 days when the baby died, and over the next decade until 1999, as Folbigg lost her second, third and fourth child, the guilt she felt as a “failed” mother seeped onto the page.

In 2003, Folbigg’s diaries were used as evidence that she had smothered her babies, a theory embellished by claims from prosecutors that losing four children in one family was so rare that it was almost impossible without human intervention.

At trial, Folbigg was found guilty of three counts of murder and one of manslaughter, and spent 20 years in prison before being freed by the New South Wales attorney general earlier this month.

Folbigg’s release came after scientists discovered a previously unknown mutant gene in her two daughters that could have been fatal, creating “reasonable doubt” about her convictions and grounds for a pardon.

Confirmation of a likely genetic cause for the children’s deaths has implications far beyond Australia for parents who have been accused of killing or harming their babies.

At the same time, the case has supercharged calls for a better system of post-conviction review in Australia, so that others who claim to have been wrongly convicted don’t languish in prison for years.

“Today is a victory for science and especially truth,” Folbigg said after her release in a video filmed at a rural property in northern New South Wales, where she is recuperating before taking her case back to the Court of Criminal Appeal to have her convictions quashed.

Critics of her 2003 trial say the prosecutor twisted Folbigg’s words and relied on tropes about motherhood to convince the jury that she was fundamentally unsuited for the role and had snapped under the pressure of caring for babies.

The advances in genetic testing used to free Folbigg are giving other families hope that science may explain why their children have died, but experts say sometimes even that can’t exonerate parents – often mothers – accused of harming them.

False theory jails mothers

Folbigg’s first baby Caleb died in 1989, followed by Patrick who died in 1991 at 8 months after suffering epileptic seizures that had left him blind. Sarah died during the night in 1993 when she was 10 months old, and finally Laura slipped away in 1999 aged 18 months.

The first three deaths were initially attributed to Sudden Infant Death Syndrome (SIDS), a term used when babies under 1 die for no apparent reason. Laura’s death was the first to raise suspicion after a forensic pathologist marked the cause as “undetermined.”

Police began investigating, and while Folbigg’s then husband Craig was initially supportive, he became convinced she had killed their babies and testified against her during a seven-week trial that found her guilty.

Emma Cunliffe, a professor at the University of British Columbia’s Allard School of Law, who started studying trials of mothers accused of murder for her PhD in 2004, says she noticed a key difference in Folbigg’s case.

“The other mothers whose cases that I set out to study had all been exonerated. Kathleen’s conviction was the only one left standing,” said Cunliffe, who made a case for Folbigg’s freedom in her 2011 book “Murder, Medicine and Motherhood.”

In all cases, the convictions relied on a version of “Meadow’s law,” the false maxim pushed by discredited British pediatrician Roy Meadow that one sudden infant death in a family is a tragedy, two is suspicious and three is murder.

None of the cases had access to the genetic technology that eventually freed Folbigg, yet mothers in the United Kingdom and Canada were released after the evidence was examined by a form of post-conviction review committee that doesn’t exist in Australia.

“(Australia’s) legal system failed Kathleen Folbigg,” Cunliffe said. “We didn’t need the genetics to know that this conviction was unreliable.”

As the campaign to free Folbigg gained momentum, experts began analyzing her diaries and a very different image began to emerge of the woman presented in court as a baby killer.

One of the experts, Sharmila Betts, a clinical psychologist with decades of experience working with mothers and in child protection, analyzed the contents of her diaries in 2014.

“In the absence of conclusive medical evidence, (the prosecutor) has presented cryptic and unfathomable diary entries, which Ms Folbigg denied were confessions, as admissions of guilt, thereby dispensing of the need for more conclusive medical evidence of homicide,” she wrote in a report submitted as evidence to a recent inquiry.

Betts told CNN a woman who had lost four children would no doubt blame herself for their loss.

“If you lose one child, grief. You lose a second, you lose a third, you lose a fourth. So, there’s the accumulative grief. But there’s also, ‘what is wrong with me?’” she said. “She is blaming herself. She does think that she’s done something because no one’s explained to her what’s happened to those kids.”

The scientific explanation

By 2019, some of the world’s leading genetic experts thought they had the answer.

They had conducted whole genome sequencing on the children and their mother and found that Folbigg and her daughters, Sarah and Laura, carried a never-before-seen variant of the CALM2 gene.

CALM genes regulate the protein calmodulin, which plays an important role in regulating sodium, potassium and calcium levels for healthy heart function. Variations can cause cardiac arrhythmia, and the first sign of a problem can be sudden death.

There was no record of the variant, and the scientists rushed to present their findings to an 2019 inquiry into Folbigg’s conviction that had largely been called to hear objections to the use of “Meadow’s law” in her trial.

But while the genetic evidence was accepted, some after submissions had closed, the retired judge leading the inquiry, Reginald Blanch, concluded that everything that he had heard and read “reinforces Ms Folbigg’s guilt.”

The following year, in November 2020, 27 scientists published their evidence in a paper that laid out the results of whole genome sequencing on Folbigg and her children.

The findings convinced more than 100 of the world’s leading scientists that she’d been wrongly convicted and they signed a petition urging the NSW government to hold another inquiry.

From November 2022, the new inquiry was told that Folbigg’s sons – Caleb and Patrick – carried rare variants in the BSN gene (or Bassoon), whose deficiency is known to cause lethal epilepsy in mice.

But more crucially, scientists explained that Folbigg and her daughters carried the CALM2-G114R variant, and that while it was totally new, a similar variant had been found in an American family, where a 4-year-old boy died suddenly, and his 5-year-old sister suffered a cardiac arrest.

This time, retired judge Tom Bathurst accepted the science and recommended Folbigg’s pardon.

How the science is helping others

One of the lead authors of the study, Professor Carola Vinuesa, says that Folbigg’s case has encouraged other families and lawyers to come forward, seeking genetic evidence to clear mothers accused of harming their babies.

In those cases, not all of the children have died. Some mothers accused of injuring their children are seeking a genetic explanation for their symptoms to counter claims of child abuse, she said.

“The majority of these mothers have not harmed their children, but the children have these very rare conditions. And a few cases I’ve worked on already since the Folbigg inquiry, we’ve been able to make a genetic diagnosis. They’re very rare, so they’re not in the textbooks, you can’t find them easily,” she said.

The mothers are being accused of “medical child abuse” or “fabricated or induced illness by carers” – when carers harm otherwise healthy children or fabricate their symptoms to force hospital visits and medical tests.

In the past, such behavior was known as Munchausen by proxy, which was considered a mental illness by Meadow, the same doctor struck off the British medical register for providing wildly inaccurate statistics on SIDS at trials that saw some mothers jailed.

In a 1989 article in the “ABC of Child Abuse,” he wrote “for a worried parent to seek a second or third specialist opinion is reasonable: to seek a 22nd opinion is not.”

Vinuesa, with the Francis Crick Institute in London, says mothers accused of medical child abuse are reluctant to talk publicly about what’s happening in case they’re perceived to be seeking attention, one of the traditional markers of Munchausen by proxy.

One mother in the United States, who declined to be named, told CNN that she worries that if she speaks out, it’ll work against her and she could be imprisoned or lose access to her children, who have been taken from her as officials investigate the claims.

Helen Hayward-Brown, a leading expert in Munchausen by proxy, told CNN the allegation is becoming more common, and mothers are finding it more difficult to defend themselves, even when genome sequencing shows their child has a genetic illness.

“It’s really, really hard for them to defend themselves because you can have a coexisting diagnosis, as well as supposedly harming your child,” she said.

Seeming to know too much about their child’s illness, or asking too many questions can put parents, particularly mothers, in a vulnerable position, especially if they seek out other medical opinions, she said.

“Part of the profile is the mother has too much medical knowledge. She’s overly interested in the medical situation, the mother is doctor-shopping,” said Hayward-Brown, pointing out the fine line some mothers need to walk.

“If you’re a very good mother, and you care about your child, of course the first thing you’re going to do is look up what’s wrong with your child, and particularly if they’ve got a diagnosis and a rare diagnosis, you’re going to look it up immediately,” she said.

“There are a number of different support groups around now for parents of children who do have rare genetic disorders, and one of the first things they say on their websites is that a lot of these mothers are falsely accused of harming their children.”

Mothers aren’t being believed, she says, and Folbigg’s case shows that when a child dies of a rare genetic disorder before diagnosis, the results can be catastrophic.

The path forward

The world has changed since Folbigg was imprisoned, well beyond advances in genetic testing.

She entered a cell the same year Concorde took its final flight, former US President George W Bush was claiming victory in Iraq, and MySpace was emerging as a new social network. The iPhone was still four years from its global launch.

On her first day of freedom, Folbigg was “bamboozled” by phones and delighted to discover video-on-demand services, her friend Tracy Chapman told reporters in a press briefing carried live on national television.

“She just wants to be able to live a life that she’s missed for the last 20 years,” said Chapman, who has created a sanctuary where Folbigg has the space to rebuild her trust in society.

“I’ve got a whole heap of rescue dogs here. We’ve got chickens and guinea pigs and rabbits. I’m a wildlife rescuer, so we’ve got a menagerie of wildlife floating around in various stages of release.

“She’ll help me with all of that because she loves animals,” Chapman said.

Bathurst, who heard the second inquiry, is yet to publish his full report, but questions are already being asked why Folbigg had to fight so hard for freedom, when women elsewhere were being released.

Even after the scientific evidence was published, it took more than a year for the government to call a new inquiry and another year before Folbigg’s pardon.

The Australian Academy of Science acted as an independent scientific adviser during the second inquiry to make sure the world’s leading scientists were heard. Now lawyers are taking up the fight to make it easier for the wrongly accused to seek justice.

Folbigg’s legal team and other associations, including the Law Council, the Sydney Institute of Criminology and the Australian Lawyers Alliance, say Australia needs a post-conviction review body to examine other potential miscarriages of justice.

“There are independent bodies for identifying and reviewing miscarriages of justice in the United Kingdom, Scotland, Norway, New Zealand and Canada. We are lagging behind the rest of the common law world,” said her lawyer Rhanee Rego.

Andrew Dyer, director of the Sydney Institute of Criminology, says that’s due to a lack of political will in a country where society calls for harsh punishments for people found guilty of breaking the law.

“I think the general disdain in the community for convicted offenders has a lot to do with the indifference of governments to this issue,” said Dyer, one of more than 30 legal experts who have signed a petition calling for a permanent review body.

The UK experience shows that miscarriages of justice are perhaps more common than people think. Since it began in 1997, the UK’s review commission has overturned 540 convictions or sentences, according to its latest annual report published last October.

As he announced Folbigg’s pardon, NSW Attorney General Michael Daley, told reporters that he’s “open” to discussions on potential changes to the system.

“I think we have to have a look at this case and all of the material that’s been put before Mr Bathurst, all that’s gone before us now to learn from it, and to amend the law, if needs be,” he said.

In Australia, most criminal matters are heard by state and territory-based court systems, so any national review body would require agreement between different tiers of government.

When approached about the possibility of a national criminal cases review commission, Australian Attorney General Mark Dreyfus declined to comment.

In the video released to media on June 6, Folbigg is seen arranging flowers, including the dainty white buds of Gypsophila, known as “baby’s breath.”

“For the last 20 years I have been in prison, I have forever and will always think of my children, grieve for my children, and I miss them and love them terribly,” she said.

If her children had survived, Caleb, her first born, would be 34, and the last born, Laura, 25.

Perhaps they might have had their own children by now, and at 56, Folbigg would have been a grandmother.

Chapman said of her friend’s traumatic experience: “If it doesn’t make us better human beings, or humane beings, I’ll be just devastated.”

“The worst thing for both of us is that this could happen to someone else.”

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This story has been updated